CLL and Calquence

[Vski]

I have CLL with enlarged spleen 19cm and WBC 106,000. My Dr wants me to start Calquence. I’m concerned about the side effects. Is anyone on Calquence and how isit going?

[Skyshark]

Welcome, I'll get the ball rolling.

Calquence is one of the 3 covalent BTKi drugs that are commonly used for treating CLL. It's considered to be a 2nd generation drug. One of the other 2 is a 1st gen that Calquence supplanted and the 3rd is quite new. These drugs control the proliferation of CLL and reduce the ALC close if not down to normal. It is taken every day for as long as it works or is tolerated. If it's going well blood tests and appointments are every 3 months.

Nodes and spleen melt away.

No one gets ALL the side effects, some get none at all.

There are side effects that occur early in treatment and reduce with time. Others can appear later. Some are very inconvenient personally while others are of more concern to your doctor(s).

One that appears quite often are headaches. The consensus is caffeine. I can't tell you if that's a cup of strong coffee or caffeine tablets. Others take the tablets late and sleep through the headache.

When asking for personal information and experience you get more replies to posts that are "locked" to "community only" and not visible to "everyone" as that allows internet search engines to find the post.

healthunlocked.com/cllsuppo....

[AussieNeil Partner Administrator]

Hi Vsky and welcome to our community! What you've written immediately reminded my of this post I wrote nearly 10 years ago, because your WBC of 106,000 is very close to 100k.

The 100k myth - Where did the "Treat CLL when the Absolute Lymphocyte Count (ALC) gets above 100(thousand)" myth come from?

healthunlocked.com/cllsuppo...

As you'll read in that post, the triggers for starting treatment relevant to what you shared are;

- Massive (ie, ≥6 cm below the left costal margin) or progressive or symptomatic splenomegaly.

- Progressive lymphocytosis with an increase of ≥50% over a 2-month period, or lymphocyte doubling time (LDT) <6 months

If you feel reasonably well and aren't convinced after reading all the triggers for starting treatment referenced in that post match with your situation, you can use the CLL Society references in that post to arrange for a free second opinion or to find another specialist that might be more up to date with the fast changing treatment options for CLL. If you are satisfied that it is indeed time to start treatment, Calquence (acalabrutinib) and Brukinsa (zanubrutinib) are both very good and commonly recommended treatments for CLL, but you stay on them as long as they continue to keep your CLL under control. Fixed term combination therapy treatments are also possible, but can be tougher to get through depending on your general health.

There are around 1,700 posts on Calquence (acalabrutinib)

healthunlocked.com/cllsuppo...

and about 400 on Brukinsa (zanubrutinib), which was FDA approved more recently

healthunlocked.com/cllsuppo...

Here's a post comparing them

healthunlocked.com/cllsuppo...

Neil

[stevesmith1964]

HiI have been on Acalabeutinib for 4 yrs after O+I , was diagnosed stage 4 in Nov 2020.

I have had no side effects , monthly bloods stable and 6 monthly Flow still shows in am in umrd.

[Nucleusman]

Been on Calquence about 2-3 years and been in remission for 1 year so it works. Side effects different for some people. For me unexpected body bruising which goes away. Also stay out of sun forever and use a 50 factor sunscreen as susceptible to skin cancer Wonderful well proven drug

[CLLquilt]

hi Vski

I have been on Calquence since last August. I am NOT among the ~80% who have had little or no side effects. I have had to stop Calquence twice during treatment (hospitalization and scheduled surgery). When you stop, you have to go through the initial side effects again.

Headaches were not bad and I would have a half cup of coffee or a cup of tea to help. Those faded within 2 weeks.

I was very tired both times I had to restart but our bodies are fighting and I found giving myself time to rest was very helpful

I will say the nausea and diarrhea was the worst. After I am on Calquence for 2-3 months the nausea faded somewhat. Occasionally I still take ondansetron for nausea and have found the dissolving tablets work best. I haven’t had the headache side effect of the Ondansetron.

I carry an anti-diarrhea tablet with me at all times as this is the side effect that comes on quickly and without warning.

I feel like those of us who have had side effects can be frustrated by hearing that the side effects are not bad. I have learned that after ~10 weeks I do feel better. Patience is key and at least for me the side effects can be frustrating but there is a time when the side effects fade.

I have had surgery (re)scheduled for next week so I am stopping Calquence for 10 days and I know I’ll have to go through the side effects again but I already know to look to mid-April for relief and that does help.

I have also found I get frustrated with side effects of both medication and CLL but now that I am better equipped with relief medication and knowledge - the 10 weeks post surgery will hopefully fly by and I will be back on my feet in time for spring!

Good luck and I hope you have a symptom free Calquence start! Let us know how you feel!

[Teemed]

been on it 4 years. Headache at first cured with cofffe. After 2 months no issues.

I bruise easily but live very active. I’m in remission! Have some fuzzy thinking but could just be age .

I m in the sun a lot as u hunt, fish and scuba dive( I’m 64) so I cover up and see a dermatologist 3 times a year for skin checks

It’s a great drug, I do carry around nausea and headache and diarrhea meds but it’s just for mental security, Best to you and everyone and may we all get all the blessings that are available with this burden. I’m not special, everyone in the world eventually gets something

[Zeus52]

Hi Vski - I started Calquence in May 2021, I felt a bit lightheaded for a short while but otherwise no side effects other than the odd headache which clears like magic with coffee (I’m a coffee lover so no problem there). My enlarged spleen and neck nodes disappeared very quickly and my blood results have been in the normal range since - on my last 3 monthly visit I was told they were “excellent “. Over the past 4 years I also had a hysterectomy with radiotherapy and chemotherapy afterwards as a preventative treatment-my Calquence was paused for a while as I had neutropenia. I wish you luck on your journey 😊

[Mining_Guy]

i have been on Calquence aince May last year. No side effects. Lymphocytes were 280,000 and now in the normal range. Alao had Obin infusions to befin with. Will get uMRD check in May.

[Bobby9toes]

I’ve been on Calquence for a little more than a year. As most have already said, I had headaches at first, but coffee or Tylenol for tension headaches always worked. I get red splotches on my face often, but they usually disappear within the day. Other than that, it has been a miracle drug for me. I’m already in remission. I’m sure you will do fine on it. Best wishes on your journey.

[bagelstreet225]

I started calquence/acalabrutinib on July 1, 2024. I've experienced no side effects and achieved more than 75% regression(aggregate) after six months and approaching complete remission.

Best,

Pat

[Jackie80]

I’ve been on calquencw for 4 years and doing ok so far Good luck

[Ashwas]

I am taking Alcabrutinib since September 2024 and all my blood parameters are normal now. I am taking 2 tablets now. Do they reduce the dose after sometime or do we have to continue with same dosage even after blood parameters show normal

[Blitzkrull]

I began taking Calquence on Mothers Day 2022. Like most, I had some side effects the first 2 weeks (a little nausea, tiredness, muscle ache) and the morning headaches lasted a little over a month. Otherwise, my numbers returned to normal and have stayed that way since. I have had to reduce dosage by half, two times during treatment, while treating a recurring fungal infection with Itraconazole. It is true that the side effects came back for a short while when I went back to the normal dose. Also, the off target side effect of weakening the platelets’ clotting ability is noticeable but completely manageable. So far the benefits have far outweighed these “issues.”

[GAVIOTA]

Hi, I had the same concerns as you.

Now I have been taking it for 15 months and everything is going well, the spleen has returned to its size and the leukocytes have been gradually decreasing (at first they go up a lot and then they start to go down).

The first month I had severe headaches, which improved with paracetamol and then disappeared and I have not had any other side effects.

All you have to do is set an alarm on your cell phone and take it every 12 hours (if for whatever reason you forget to take it, it's not so serious).

And that's all I can say, it is a very comfortable and effective treatment.

Good luck

[TartanAlum]

I've been on Calquence for 3 years. I did have short-term mild bruising, but nothing else.

EXCEPT my blood pressure tends to run low. Calquence (among other medications) drove it even lower, to the point where I was perennially fatigued. Because my CBC readings were all within normal bounds and steady, I went from dosing twice a day to once a day, with no apparently impact on my CLL. If you get really fatigued, that would be something to look at with your doctor.

[Sunrisejoy]

Hello VskiJust start this past sunday, 1 pill, 100 mg, 1 time a day. (Began alpurinol 2 days prior).

So far, 1st day at Fr. bloodwork showed platelets 83 to 96. Wbcs 80 to 100 (was told to expect wbcs to increase as a sign its working). This forum is amazing & my team is also.

Increased urination noticed day 1, but may be simply from water intake increase.

Yesterday, fleeting headache only. Bloodwork again tomorrow.

Doc has me watching blood pressure and I have permanent a fib, on blood thinner, so, report any bruising.

Wonderful folks on here that I message privately as well. Take great care!

SJ